Azilect - when do side effects start ... - Parkinson's Movement

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Azilect - when do side effects start showing?

narcisa56
narcisa56
65 Replies

I was prescribed Azilect 6 months ago, immediately after the diagnosis. I was very reluctant to take it but under pressure from my children I decided to give it a try. As I am afraid of any unpleasant side effects, I wonder how long it takes for them to show. Any information will be appreciated. I've been taking it for 4 days and so far so good. For how long do I need to worry?

Best wishes to all !

Mojca

65 Replies
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Malcomx

Hi there, I've been on it coming up to 4 years, 1mg daily with no apparent side effects...

2 likes
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narcisa56
narcisa56
in reply to Malcomx

That's encouraging, thanks! Hope I will be the same.

Do you see any beneficial effects?

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Malcomx
Malcomx
in reply to narcisa56

Not significantly, however if I miss a dose I think I might by a little worse; my symptoms are mild, but I'm going with the inconclusive notion that it might slow down progression. I hope you do well either way. Exercise really does make a difference.

1 like
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narcisa56
narcisa56
in reply to Malcomx

Yes, it is probably worth giving it a try. Not to have some regrets later on.........

Best regards!

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Mjm012
Mjm012
in reply to Malcomx

Do you take Azilect AND carbidopa?

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Malcomx
Malcomx
in reply to Mjm012

No, just that and mirapexin 1.05mg daily.

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ion_ion

Hi Mojca!

This was the medicine the dr. of University of Michigan prescribed me but I did not take it. He said this will slow down the disease. But other doctor, who is a researcher too, told me that was not proved. Some people tolerate it very well while other get nasty side effects. Let us know how it works for you! I take 2x100/25 c/l a day plus 1g B1, once a day. So far so good for about 2 years from diagnosis. Except the RH tremor when I'm stressed I do not have other symptoms.

1 like
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narcisa56
narcisa56
in reply to ion_ion

Hi, ion_ion!

I promised to keep you posted :)

Maybe you remember - I was asking about B1. I gradually built the dose up to 1 g (I was taking it for 5 weeks) and up to that ttime felt nothing special. Then I had an appointment with my neurologist, my younger son accompanied me. Quite unexpectedly, they measured my blood pressure and it was elevated (160). Since my BP had always been low, I attributed this to B1. I decided to stop it for a while and see what happens. It really got lower by the day. And at that time I gave in to the constant pressure from my two sons to start Azilect which I did no want to take, just to calm them down. After some time, when I see what happens, I will resume B1 again (in addition to Azilect if it gives me no side effects). I am not sure what to do with the elevated BP if the situation is the same again......

Best of luck and thanks for the kind words

Mojca

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ion_ion
ion_ion
in reply to narcisa56

Hi Mojca!

One day I tried 4g of B1 plus acid folic and I felt my BP went crazy. I never had BP issues. It was kind of scary but I drank 2 l of water and took aspirin and in about 1-2 hours the BP went away.

At 2g and now at 1g my BP is in range. The problem with PD is everyone responds differently. My scariest symptoms were balance , depression and insomnia which disappeared after 30 days of B1. I started carbidova one year later for the tremor but it helps only partially. I tried Amantadine for 6 months for the tremor but did not help, just made me sleepy.

In your case maybe later start B1 slowly from low dose by monitoring the BP. I'm curios how Azilect works for you, too. If B1 did not help maybe the dose was too high for you.

And educate yourself not to worry about anything and eliminate the stress. Dancing, fishing , gardening and any other no stress activity helps. I'm still working like software engineer and programming is very relaxing for me as it takes the focus away from PD.

Actually I noticed when my focus is diverted my tremor completely stops.

Wish you the best!

1 like
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ParlePark

Took for about 6 months. When combined with Amantadine got horrible headaches. New neuro took me of Az.

1 like
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narcisa56
narcisa56
in reply to ParlePark

I hope you are well even without it.

Good Luck!

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justjohn46

hi narcisa i hope i dont burst your bubble, but i took azilect for years and it done nothing for me i stopped taking it years ago i think you will find other people like me who stopped taking it.regards john.

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glenandgerry

Exactly the same for my husband too.

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narcisa56

It could well happen to me as well.

Did you notice any symptom worsening or withdrawal symptoms after stopping?

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narcisa56

By the way - you did not burst my bubble but taught me a nice new English phrase ;)

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mishod

I have been talking it for years and I have not noticed side effects. What side effect do you expect ?

As far as efficacy with PD usually you work out a combination of meds and supplements that works for you.

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narcisa56
narcisa56
in reply to mishod

Headaches or vomiting at least.............the list of side effects even contains a stroke!!

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mishod
mishod
in reply to narcisa56

Well I balance that thought with the positive side of things. Combined with CL I was able to function again.

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Emily89

I've been taking azilect and it's generic for over 4 years and haven't experienced any side affects.

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Mjm012
Mjm012
in reply to Emily89

Do you take Azilect in addition to Carbidopa, or just alone?

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rebtar

4 years and no side effects.

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rebtar
rebtar
in reply to rebtar

Together with CL.

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narcisa56
narcisa56
in reply to rebtar

Seems that most people have no side effects........definitely good news!

Best of luck!

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horsplay

azilect gave me hallucinations within the 1st 2 weeks. they stopped as soon as I stopped taking it.

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narcisa56
narcisa56
in reply to horsplay

This sounds quite scary......I hope you are doing well without it.

Good luck!

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marcet

Taking 1mg daily for more than 5 years with no side effect

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narcisa56
narcisa56
in reply to marcet

Is this the only drug you're taking?

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marcet
marcet
in reply to narcisa56

I started madopar in nov 2018 and requip a month ago

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Susangrace

I’ve taken it for 4+ years will no side effects. My MDS said it might slow progression so I’ve been willing to give it a try

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narcisa56

Good news, thanks!

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Mjm012
Mjm012
in reply to Susangrace

Do you take Azilect alone, or in addition to Carbidopa?

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Susangrace
Susangrace
in reply to Mjm012

Just started Rytary too

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narcisa56
narcisa56
in reply to Mjm012

Alone.... After the diagnosis I first started with B1 (5 weeks). It gave me high blood pressure (160) and I discontinued. Now I started with Azilect and will eventually add B1 again (maybe after consulting my doctor on how to manage the blood presssure......

Good Luck!

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pmmargo

My neurologist who is at Georgetown university also believes Azilect slows progression of PD. I have been on it for less than a year. I think it is one of the safest drugs and I really like the idea that it help the body retain it's own neurotransmitters longer, which seems super sensible. I also tried Neupro but the patches were uncomfortable and did not seem to help. To be honest I can't tell if the Azilect is working but it doesn't seem to be doing noticeable harm.

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narcisa56
narcisa56
in reply to pmmargo

Thanks for the optimism, I really need it :)

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FMundo
FMundo
in reply to pmmargo

My Georgetown meurologist prescribed Azilect for me, my neurologist in Maine stated mentioned the fact that the drug might slow down advance of symptoms while my Neurologist in Phoenix said it had been determiined that Azilect does NOT slow progression. Who to believe?

What is a Parkie to do ? Probably limit number of neurologists one talks to. One wonders how "up to date" neurologists stay with current research.

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ion_ion
ion_ion
in reply to FMundo

I was in the same situation when two doctors, both motion disorders researchers, told the same your doctors told you:

azilect slows down progression while the other said such a thing never was proved.

In that situation I decided not to take it.

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Coot18
Coot18
in reply to FMundo

In the ten years since my diagnosis

I have heard pros and cons

about Azilect

from medical professionals

and from PD patients

some believe it works

some say its snake oil

None of them have been able to tell me anything

about what it is supposed to do

beyond what I found on a drug website:

drugs.com/azilect.html

Azilect (rasagiline) works by increasing the levels of certain chemicals in the brain.

Azilect is used to treat symptoms of Parkinson's disease (stiffness, tremors, spasms, poor muscle control).

Azilect is sometimes used with another medicine called levodopa.

I am not a medical researcher with a PHD

but I would think someone should be able to articulate

in a language I could understand

what this drug is SUPPOSED TO DO for me

beyond over-simply saying "increase brain chemicals"

What were the chemical and biological effects

the drug designers hoped to achieve?

I would like a medical professional or PD patient

to simply describe for me the expected chemical-biological effects

from this drug

beyond

"to treat PD symptoms"

Whether the drug achieved the goals the designers hoped for

is a separate question.

Until we know how it is supposed to work

how do we determine if it did work?

there are plenty of butt covering warnings about potential side effects

but how is it designed to interact with my brain and body?

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pmmargo
pmmargo
in reply to FMundo

According to Fox 2017 study says MAO-B is protective: michaeljfox.org/news/could-...

I sure hope MAO-B help since that's all I'm on right now. Best wishes! Yours in PD, Paul

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gingerj

I've been taking azilect for over 3 years. No problems. I have missed a couple of times and certainly felt my symptoms were worse on those days.

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narcisa56
narcisa56
in reply to gingerj

Hm, was it from disease progression or as a withdrawal symptom - who knows.........

Best of luck!

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b-bar

4 years no side effect

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narcisa56
narcisa56
in reply to b-bar

Great, thanks!

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AaronS

nil side effects actually ive never noticed it do anything both positive or negative

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narcisa56
narcisa56
in reply to AaronS

I was told that effects may not be seen but happen anyway - under the roof ;)

Best wishes!

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jeffmayer

Was on it for 2 years never noticed any Side effects

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narcisa56
narcisa56
in reply to jeffmayer

That's encouraging, thanks!

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billyboy11

Hi Majca , I am on azilect for 9 + years and no side effects. All 3 neurologists I consulted with recommended it without any real evidence I could find to support it. I went with it anyway .I am also on stalevo now which is a mixture of CL + entacapone . I added 1 gram of Thiamine B1 which seems to have improved my general well-being and dyskinesia. I get 2-3 hours on for each drug intake and considered DBS to better manage my quality of life but postponed it until I take my exercise and diet and sleep more seriously. I am also looking at the work of Dr. Joe Dispenza who believes in self healing and offers programs involving meditation techniques and explains the workings of the brain etc convincingly.

Azilect has been with me since day 1 and I believe it played it’s part in my general wellnesss.

Best of luck on the journey to a better quality of life on or off medication.

Bill

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narcisa56

Billyboy, thanks for the kind wishes :) I'm so scared of the future. I would like to be of some help to my kids and grandchildren if I get any.... and not a burden. I cannot control my negative thoughts.

And I somehow feel that whatever I do I cannot make much difference. After the diagnosis, I started taking B1 (for 5 weeks). It caused my blood pressure to rise, and I stopped for a while ( I would definitely like to continue). - I am even thinking of visiting dr. Fancellu in Italy) Then my two sons talked me into starting with Azilect since they are more into conventional medicine than me, and they thought that I was making a fatal mistake by not taking it.

You are mentiioning meditation - do you notice any beneficial effect?

1 like
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ruff1
ruff1
in reply to billyboy11

Can I ask how long you have been diagnosed?

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billyboy11
billyboy11
in reply to ruff1

Diagnosed almost 10 years though there were indications earlier.

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billyboy11

Meditation time even for a short time is beneficial. Don’t be troubled if it’s hard to concentrate at times. Try everything. Become an expert on yourself. You may need some time with a therapist. Pd

Effects are different for everyone e.

1 like
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narcisa56

Well put! I'm starting to think this is the lesson - becoming an expert on myself. I've never paid much attention and given any love to myself :(( And here I am.

Meditation might be one of these neglected things......

Good luck!

1 like
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PDGal4

I have been taking 1 mg Azilect for 5.5 years now (diagnosed 7.5 years ago). The doctor who prescribed it said many movement disorder specialists, herself included, believes it slows progression but the FDA has not come out and sanctioned it. I've had no side effects I am aware of. I'd already been on C/L for about 1.5 years when it was prescribed, but I know people who it has been their first and only drug for a while.

My current doctor wanted to switch me to Xadago recently, and research seemed to indicate a relatively safe alternative. But I decided to stick with Azilect--I'm of the 'if it's not broke don't fix it mentality.' I also take Rytary and 4 mg Neupro patch.

I think my progression has been slow, but who knows. I do exercise almost every day, walk or yoga or sometimes both, eat well, meditate, practice Mindfulness. I feel I manage the symptoms better than in the past. I do get more tired doing things and have to watch my energy level, and notice a decrease in stamina, but most people do not know I have PD. If they've noticed anything, they haven't asked.

As to negative thoughts, been there. Greatly helped by a therapist I still see and an MBSR (Mindfulness Based Stress Reduction) class, which started me on meditation and with much work and practice, learned to live in the present moment. It's a tough journey. The disease sucks but there's much more in my life to be grateful for.

3 likes
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betil1
betil1
in reply to PDGal4

👏👏

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ruff1
ruff1
in reply to PDGal4

From my husbands point of view theswitch has from Azilect to Xadago was very positive, he had been in Azilect for 8+ years and swapped over a year ago , he had to be weaned off Azilect first over two weeks ( slowed down a bit but not really a problem) . Xadago kicked in almost from the day he took it and really helped with shortening the off periods to slow down rather than off fir 15-30 mins a time . Now very few off periods during the day . Nights are still a struggle but they have been for sometime. He’s been diagnosed 13 years x

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PDGal4
PDGal4
in reply to ruff1

Hi ruff1, Thank you for sharing. You'd shared your husband's experience with me previously in response to my post asking about Xadago, which I much appreciated. I followed up with another doc in the same movement disorder group and he felt my off periods (30 minutes to 2 hours a day) not warranting change to Xadago. It is more expensive ($30 month co-pay) than Rasagiline (Azilect generic) which I have $10 co-pay. Overall I am reluctant to make med changes; my own fear of the unknown. This doc suggested Gocovri for dyskinesia, but that's another story.

Thank you again for sharing and I'm happy for the two of you that your husband is responding so well to the new medication.

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janisjose

Hi, diagnosed with YOPD last 2011, I was taking Azilect 10mg for straight 7 years, I got severe depression, hallucinations and severe anxiety that I got to resign from work. I think that's the side effect of Taking Azilect. The side effect is worst. I changed doctors from then on, and on 2018, one doctor prescribed me to gradually get off with Azilect and gave me Levodopa Carbidopa (Lavida brand is best for me) 250 mg, I'm taking it 3x a day and it gives me relief. I'm also taking glutathione with q10 as my supplement. I feel normal with minimal tremors but can control it. Amantadine, Azilect, tidomet and sine met are worse prescriptions. It gives you hallucinations, migraines, depression and anxiety to the extreme!!!! I once read an article about YOPD prescriptions. It says doctor's approach are : some starts to give you the strongest medication believing that it will heal you the earliest time but some doctors starts on a lower dosage. I go with the later, because YOPD is a progressive desease. If you're system get immune on the strongest medication, what's next? It will stop and it worsen... starting on a low dose medication and as it goes along, it lowers the progression and for 2 years of taking levodopa only, 2 years of normal activity and I feel best everyday. Hope all is well with you everyday....

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faridaro

Right after being diagnosed I was prescribed Rasagiline (generic for Azilect) 1mg/day but developed brain fog and cut it down to 0.5 mg/day which somewhat helped. However, about 5- 6 months later started experiencing daily headaches and discontinued taking it per my neurologist's advice.

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Despe

Narcisa,

It's not "one size fits all." Different PwP react differently to different meds. It's trial and error. My husband's MDS prescribed it for him but only 1/2 tablet a day. He told us "Less is more." He started in June 2019 and so far it's helping him a lot!

In general, I believe Azilect is one of the "good" meds that help slow down progression. We actually wanted to try Xadago but MDS didn't want to prescribe it as it's extremely expensive plus it's a fairly new med.

Bottom line: unless you try it, you won't know if it will help you or not.

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narcisa56
narcisa56
in reply to Despe

I didnt consider the possibility of taking 1/2 tablet - I like the idea, thanks!

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Fenian5

Hi! I have been on Azilect (1mg) for 9 years with no apparent side effects. I also take Mirapex ER and Rytary. Diagnosed 13 yrs ago but had biomarkers 20 yrs before Dx. I exercise daily, either Rock Steady Boxing, chair yoga, or stationary bike and the BIG Program. Other then having spinal fusion and occasional sciatica, I am doing fine. Good luck on this journey; it’s not for the weak!!

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CKingPs
CKingPs
in reply to Fenian5

Hello. Hope you don’t mind my asking Do you take azilect and mirapex at the same time? Do you take them morning or night? I am trying to transition to Rytary (again) I currently take sinemet during the day and Rytary at night. I work out everyday and try to avoid fat\protein near dosing. Finding correct dosing seems tricky with Rytary. Seems like it may need to be prescribed by body weight. I reduced my azilect because blood pressure dropped. .5 seems to work. Thank you.

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Artsue

I’ve been taking 1 mg per day at bedtime since I was diagnosed three years ago. I had two or three mornings of feeling slightly nauseated during the first week - since then, nothing. For the last nine months I have also been taking Sinemet three times a day (6 am,11 am, and 4pm). I’m very happy with the control this regimen is providing. Good luck - it’s a journey!

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